Probably my last post because I solved my RLS problem. It's gone, and no drugs.
I've posted this as a c omment in response to several individual posts but get pretty much "how nice for you" responses and then they go on talking about drugs.
So one last time. If you are unwilling to try this and instead want a drug, fine and good, but some of us do not want to take drugs
Here are my previous symptoms: yes I would get that creepy crawly feeling but I resisted moving just to see what would happen. What happened was everything from my leg jerking all by itself to half my body leaping off the bed all by itself, every 30 seconds. Other times, my right foot would suddenly wag back and forth without warning. Usually at night but not always. So, not a mild case.
Yes I think it involves leaky gut but I have not found a fix for that; insatead I avoid ingesting those things I have found to be causal of the symptoms. Those things are foods that contain lectins: grains, legunes, nightshades in paticular. Gundry has a big list. For me corn is much worse than wheat; it's not the gluten but the lectin content.
In addition, I got a Bulk Supplements package of L-tyrosine powder. Meaning it does not have anything else in it -- no magnesiun stearate, no capsule, etc. And I dissolved 1/4 teaspoon in the measured water I drink daily. The dose has now gone down to 1/8 teaspoon just in the latter half of the day, after a couple of weeks.
No RLS. The longer I stay off lectins, the better my situation, indicating but not proving that they were causing leaky gut, and I couldn't find anything other than avoidance that works. No leaky gut protocol did anything, because I was mixing the cause with the supppsed fix.
So there you have it -- I was astonished that no one appeared to jump on this simple fix, and I deciided to do this post so that anyone who was motivated the same way I am, to find a non-drug solution, at least had a chance of having this work IF THEY ACTUALLY TRIED IT. Sorry for the shouting, but when I get all the backfeed from those who HAVE NOT TRIED IT, it is frustrating.
And as always, all the best to all of you.
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Bernaldi
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And the two replies so far are from people who HAVE NOT TRIED IT. So what is the point of my being here? Same stuff -- "how nice for you." I think I am put of here. All the best.
Hi Bernaldi - I have definitely taken note. I'm not the RLS sufferer, it's my elderly mum. Not sure if I saw your original post but this is definitely a route I'm going to look at for her (I have a feeling Eryl may have mentioned Lectins quite a long time ago - I've likely added it to a long list and not followed through) - I'll also make a note of the supplement and will seek it out. Thank you!
Excuse me? How do you know whether I've tried it or not?Actually I have. I have spent decades on restricted diets for my MS. I was saturated fat free and gluten free for 15 years.
Then I decided my severe RLS was too unbearable and tried a strict paleo diet for 9 months. I ate only organic grass fed meat, oily fish, green leafy veg. No grains, legumes or carbs or sugar.
Guess what?
It did NOTHING.
Then I tried low FODMAPS for 6 months. Again, NOTHING.
Have you considered that there are different CAUSES of RLS?
I know why i have RLS it’s because mine is inherited so down to genes , i have no triggers regarding foods or drinks but i do from certain meds ie antidepressants and antihistamines. Many people post what’s works for them all usually different from the other. The fact you have come here to tell us what works for you is great and some members have shown an interest or happy you have found what works for you. 😊.
There are literally dozens of posts on this site (and other sites) of people claiming to have found THE ANSWER to RLS.
And there's no doubt that that particular intervention has worked for them.
Personally, in addition to numerous medications, I have tried:
*several different diets, seriously and for a lengthy time (low FODMAPS, gluten free, low acid, anti-inflammatory)
*over a dozen alternative therapies (neurofeedback, transcranial magnetic stimulation, fecal microbiota transfer therapy, acupuncture, shamanic healing, hypnotherapy, EFT, TENS machine, etc)
*50+ dietary supplements /micronutrients over the years
Most of the time i have tried these interventions on the back of either studies reporting success, or people claiming success with them.
While a very small minority have helped to a modest degree, the majority haven't made a scrap of difference.
As a result, there comes a point when one becomes somewhat desensitised to claims of success.
It takes a whole lot of effort and often money to try different interventions and many people with RLS / fatigue/ other health issues don't always have the energy or motivation to repeatedly try.
I don't think there's anyone on here who actually wants to take drugs for their condition. And I'm sure there are hundreds, or thousands like me who have gone to some lengths not to do so.
It's wonderful that you've found what works for you. And i'm sorry that you feel so aggrieved by what you perceive to be a lack of enthusiasm from other members.
I have never taken meds and have tried all the non drug treatments..I inherited my RLS from my Mum..I'm not sure I understand exactly which foods are lectins.. Will try anything...but our bodies are all different and it seems a cure for one is not a cure for all.
I also have inherited RLS. I have tried hundreds of types of diet, FODMAP, MAGNESIUM, laying on of hands, Chinese medicines, acupuncture etc etc but sadly for ME only drugs work.It is great you have found the answer for you. Sadly we are all different.
It is marvellous you have found a non drugs route.
I am one of them that has definitely done exactly as you have!!! I am very sensitive to medication and had to find "natural" alternatives.
I have cut out all seed oils, certain vegetables which contain oxides, no fruits that are seedless, sugar and carbohydrates etc etc . I am on NO medication and my RL are so much better. The many years I was on DA must surely have done some damaged. Therefore, it may take a while to reprogramme the brain. I have NO medical knowledge but have read many researched articles and it has been found that animal products which are high in "fats" (cholesterol ) are essential for the brain. One of the reasons for the huge onset of Alzheimer's and many other chronic illnesses. If they told me to strip "naked" in the Antarctica and I would be able to get into bed and sleep 10 hours straight I wouldn't be the first one in the queue!!! We were created "perfectly" it's the "bad" food choices we make that make us "imperfect".
Just read the reply about an injury or brain problem.......you could rule out a food diet as the body is scarred but for the many who do not perhaps it would be worth giving it a try!!!!
My second laugh for the day "If they told me to strip "naked" in the Antarctica and I would be able to get into bed and sleep 10 hours straight I wouldn't be the first one in the queue!!! " 😀😀😀
Looking at your bio, you have PLMD which is treated the same way as RLS. So substitute PLMD everywhere I say RLS is the folllowing.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Thank you again for this further advice. My doctor prescribed an iron supplement which I've been taking for 3 months now. He also prescribed gabapentin but unfortunately I kept falling over with no warning so I was taken off that drug after a month and take Tramadol instead. I've bought a second-hand copy of Dr Gundry's Diet Evolution and will be trying that as soon as the book arrives so fingers crossed!🤞
What was your ferritin? What iron supplement are you taking and how much?
Take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take your iron every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Afraid you're getting thread mixed. I was fortunate enough to go to Antarctica some years ago but won't be going again as now too old. Much energy is needed getting into and out of all the waterproof clothes and little boats, not to mention hiking up (small) mountains!
Gundry's "Plant Paradox" book is very controversial. I am the very first to say there is probably a clear connection of diet with many health afflictions including RLS. Especially if you consider the leading cause of RLS being iron deficiency in the brain. Gut dysbiosis can affect iron absorption and cause severe RLS. I find very little information in support of the plant paradox position, even searching for "agree with Dr. Gundry" no results, except his website.
Like you, I believe (in most cases) the root cause of RLS is related to the condition of our gut, but there are plenty of possible gut issues exist (SIBO, leaky gut, bacterial dysbiosis etc ), thus what works for you might not work for everyone. I also believe there is no inherited “RLS gene”, but inherited genes which make us more vulnerable to gut diseases or bad responses to bacterial infections etc. Even we inherited our initial gut microbiome from our mother, thus we could inherit some bacterial strains which is causing our RLS.
Like you, most of us are trying to find the root cause of our RLS. In my particular case I strongly believe the root cause is an antibiotic resistant and biofilm creating bacterial strain of Pseudomonas Aeruginosa which was found in very high counts in my stool microbiome test. This bacteria is producing multiple types of toxins and has the most versatile ways to get iron from the infected host, even it can use dopamine from the host to acquire iron, which is needed for the bacteria in order to thrive. I’m still trying to figure out how I could get rid of this bacteria, as unfortunately in my country the possibilities are very limited.
The question in my mind if the exact function of these genes are known and proven how they cause RLS or scientists suspect these might be related to RLS, because these gene mutations are common in RLS patients. BTW, I had a genetic analysis and based on that I have no gene mutations related to RLS.
I have also had the Genetic Methylation test done and waiting for the results.I have said it before.........we all have the exact same symptoms so there must be one common denominator for all of us!!
I’d be surprised if the common denominator was not our microbiome These days scientists prove or suspect that our microbiome plays a huge role in a lot of diseases like Autism, Alzheimer’s, Parkinson’s etc. And it’s quite logical as there are 10 times more microbes lives in and on our body than the number of our human cells.
You may remember when doctors blamed stress, lifestyle, diet and genetics if someone developed stomach ulcers or cancer. Even though scientists found in the 80’s that a single bacterium called Helicobacter Pylori is responsible for the stomach ulcers and cancer (later they got the Nobel prize for it), it took decades for the healthcare system to accept this fact and start to apply antibiotics to cure it.
Thanks Sue for this great article. I’m just wondering what is the trigger which induces the RLS symptoms. I mean, regardless if you have the genes associated with RLS or haven’t, most of us have not experienced the symptoms from birth, but at a certain point in our lifetime. Like in case of celiac disease: there is gene mutation needed in order to develop the disease, but you could live all your life without any symptoms. So there must be a trigger and I believe it’s related to our microbiome.
IMHO if aging would be the trigger, most RLS sufferers would have started their symptoms when they are elderly, but it’s quite random and unfortunately even small kids can develop RLS symptoms. Like in case of Celiac: you can have the genes and live your entire life without any symptoms, while your kids who inherited this gene can develop the disease even at their early childhood. And interestingly more and more people develop Celiac disease, while the gene must be present in their parents, grandparents, great parents etc.
Aging is only one of many triggers but RLS does get gradually worse as one gets older. One can have the predisposition for it such as the genes which I have and it can show up early in childhood or not until a trigger such as pregnancy or not until later. At first I had it only once every few weeks and then over the years more often till every night when I finally saw a doctor. This took at least 8 years.
Very interesting. I have RLS, PLMD (diag in 50's) and coeliac disease (diag 40's). I do not know anything about microbiome. I will have to learn now as I am fascinated. I was once told my coeliac was caused by a traumatic experience and I had emergency major surgery at 35 yrs old (total hysterectomy and oopherectpmy, caused by endometriosis) and I lost a lot of blood and needed a blood transfusion. My brother was born with coeliac so I thought it was just hereditary.
I’m the same coeliac, rls and plmd amongst other things. My gastroenterologist told me coeliac is genetic but my symptoms were triggered by salmonella. I’ve had it over 20 years now.
Yes I tried the same recommendations that you suggested for six months. I had no improvement at all. I am a third generation sufferer with severe RLS that even resulted in my grandmother deing placed in a psych unit and treated with electric shock multiple time.
Perhaps others with genetic RLScan improve with dietary and life style changes, but I did not. Believe when I sayIdo not take any prescrption drug as a cop out.
Hello Bernaldi.....thank you for the information you shared. This is the first I've read it since I'm new to the group. I will try the L-tyrosine powder starting today.
NOTE: I have had vein ablation in both legs and it has definitely lessened the severity of my RLS. I will continue to see my vein dr to determine if we can eventually get rid of this frustrating and annoying disease! (Dr Sassan Kaveh, Alpha Vein Clinic, in Las Vegas, NV)
Thank you for reminding us of your post. I would like to try a lectin-free diet (I'm already on a restricted diet for inflammation and gut issues), as well as the tyrosine.
Your persistence is appreciated since it may make a difference for others of us. I'm happy to hear you've had such success!
If "diets" appear to help your symptoms, wonderful. But there are two talking points here.
1. RLS does not have a proven gastrointestinal component. All talk of gut-related RLS is self-referential and anecdotal. RLS is in the brain. Specifically, it is caused by insufficient dopamine in an area of the brain called the substantia nigra. This was established and proven decades ago.
2, Not everyone who claims to have RLS actually has it. There are a number of other conditions which mimic RLS. Even a diagnosis by a physician or "consultant" is not conclusive, since not one health care provider in a hundred knows the first thing about RLS.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
These days scientists prove or suspect that our microbiome plays a huge role in a lot of diseases like Autism, Alzheimer’s, Parkinson’s etc. And it’s quite logical as there are 10 times more microbes lives in and on our body than the number of our human cells. 
Have you tried these..?
This work for me before medication
UK RLS sufferers this is for you.
More help for restless legs-possible
A great success by approaching things from the other direction!
